Friday, 29 June 2012

A special needs parent is . . .


You wouldn't like me when I'm ANGRY!!!
If you are reading this hoping for assurances that it was all part of God's plan, that He chose you because you're selfless and strong and special, then you are in the wrong place.  Or if you wanted a list of how multi-skilled and multi-talented you are, how you're a nurse, doctor, pharmacist, physiotherapist, occupational therapist and teacher all rolled in to one, then you wont find that here.  If you thought this was going to be a life affirming description of how much better you are than the 'other' parents and their 'typical' kids then you'll be disappointed.  And you clearly don't know me very well! But if you head over to Facebook or scour the Internet, you'll find a multitude of stories, poems and platitudes that'll make you feel better.  You see, it has long since been apparent to me that actually the one characteristic that the majority of special needs parents share isn't compassion or selflessness, kindness or courage, it's anger! Special needs parents are ANGRY!

Just keep calm and smile . . .
In a former life, before the arrival of Little H, I came in to contact with a lot of special needs parents.  Call it fate, call it part of 'The Plan'; training for the life I lead now, call it coincidence or good fortune (perhaps misfortunate might be more appropriate some days) but I learnt a lot of lessons and a lot of skills in those years that have helped me cope with the trials and tribulations Little H, and the army of professionals we come into contact with, throw my way. One major lesson I took away was, to paraphrase a now rather irritatingly overused slogan, 'keep calm and smile'. Be nice. And don't get angry. Don't get angry. Don't get angry. Did you hear me? I said DON'T GET ANGRY!!!

Parents who were home schooling their children because they had been so let down by the education system, parents fighting the Local Education Authority to place their child in a school that might at least attempt to meet their child's needs rather than dumping him in the local mainstream, parents fighting teachers who had neither the time, the resources (or sometimes the inclination) to differentiate the class work yet further so that their child could access the curriculum; I have met them all.  I have seen mothers cry in anger because their child has been discriminated against, fathers crying in frustration because medical incompetence has put their child's life in danger, parents physically shaking at some injustice or other.  I have heard some horrendous stories of children and families being let down repeatedly by the education authority, the health authority and social services.  I have been shocked, surprised and annoyed on their behalf.  But often, part of me thought, if you'd just smiled more and asked nicely then perhaps things wouldn't have got so bad. Maybe you went about it the wrong way. All this shouting and shaking and getting angry isn't going to make people want to help. And I vowed never to be THAT parent, the angry, shouty, shaky one, the one whose voice you can hear buckling under the pressure of trying not to cry.  After all, I was at an advantage- I could see it from the teacher's perspective (having been a teacher) as well as the parent's perspective.  I would be the epitome of niceness and calm!

Happy, happy, joy, joy ...
And Little H came along and life was slightly more complicated than it had been with Cheeky.  But I learnt the names of all the receptionists and I started telephone conversations with 'I'm sorry to trouble you' and 'I wonder if you could help' and I said please and I said thank you and I thanked people for their time, their patience, for going to such trouble.  And it worked. Receptionists squeezed us in for last minute appointments, chased up test results, rang us with cancellations. Being nice worked! I patted myself on the back for being so cunning!

Then H became more complicated (or complex as the doctors LOVE to say) and we needed more appointments and started seeing more and more and more professionals. I snapped and swore at a receptionist who had the audacity to ask if I was sure it was an emergency, while H screamed in the background for the 16th hour in a row, Cheeky sat crying for his lunch and I couldn't remember the last time I'd slept for more than an hour at a time without having to get up to catch projectile vomit, or sit in a steam filled bathroom to ease his breathing or just walk backwards and forwards, listening to endless crying but being able to do nothing to help.  The swearing wasn't my finest moment. It got me an appointment mind you but I did go and shame-facedly apologise to the receptionist.  I had a word with myself after that. I repeated the 'keep calm and be nice' mantra to myself, but I realised it wasn't as easy to stay calm and smile when you've barely slept and spent so much of your time listening to screaming and crying that you'd eventually reached the 'if you can't beat them, join them' point and collapsed in a corner sobbing and rocking.  Yeah, not quite so easy to stay calm and smile then!


Time went on and the list of professionals grew. At last count there's 23.  That's not an exaggeration, I can list them if you want (paediatrician, neurologist, dietician, community nurse, opthalmologist. . .)  And Little H needed more services and equipment (specialist buggy, standing frame, supportive seating system, lycra suit, piedro boots. . . ). That's a lot of phone calls, appointments, letters. That's a lot of professionals, receptionists and opportunities for things to go wrong, or get lost, or get forgotten about, or get sent to the wrong person. That's a lot of 'I wonder if you could help' and 'thank you for your time' through smiling, gritted teeth. 

I try very very hard to remain positive and happy and calm, to remember that H isn't their only patient/ client/ service user/ whatever the politically correct term is these days. There are times though when phone call after phone call and email after email just don't seem to get the job done. Times when the service you receive (if at all) is so far below your expectations that it beggars belief. Times when Little H and I have been so let down that I can feel myself shaking with anger. Times when Little H's health has been put at risk and I could cry in frustration. These are the times when I have to take to the computer and write a 'Letter Of Complaint'. 

Getting a bit of a name for myself!
Yesterday as I finished my most recent letter of complaint (with gems such as 'it is unfathomable to me how after 9 months this issue has not been resolved' and 'It should not take this much effort on my part to organise a simple care package for my son.') and was imaginatively saving it as 'complaint to . . .', when up popped a list of recently written complaint letters. I appear to have become a serial letter-of-complaint writer.  To be fair, I don’t just sit around moaning, waiting for the next thing to complain about – it’s only for the really serious issues that I have made an official complaint, mostly for when some oversight or neglect has put H’s health in danger.  One letter resulted in a complete review of a service and an overhaul in the way it was provided, another ensured rules and regulations that were appropriate for most were adapted for H and who knows what yesterday’s letter will achieve – the head of service is coming to visit us next week to discuss the issues I raised.  It is frustrating though that it takes angry complaint letters to get things done.  I am busy enough with appointments and phone calls and therapies without having to complain to get a basic, acceptable service. 

Little H has just turned two.  So far I have submitted four official complaints about the care he/we have received.  Luckily, I have been able to channel that anger constructively into a good letter of complaint, but each time leaves me exhausted and causes anxiety about the knock-on effects complaining may have on his care and the perception people will have of me.  It is both mentally and emotionally draining.  I feel compelled to write though, partly to feel that I am doing something useful with all that pent up emotion, but also because if someone doesn’t complain, nothing will get changed and at least I am in the fortunate position to be able to raise these concerns in a (relatively) coherent manner.  What about those parents who have difficulties with literacy, who lack confidence or perhaps have learning difficulties themselves or English as a second language?  What happens to them when their care is substandard?  Who advocates for them?

Yesterday, as I challenged the person responsible for the mix up that meant H could still not be left with his carer for a few hours after nine months of organising and planning, I felt myself start to shake.  I tried to keep my voice on an even keel but I could feel it breaking as I explained that their failure to resolve this issue had resulted in H’s older brother Cheeky not being able to go to the soft play area as promised.  Instead, with me, he had to stay and babysit his brother and two carers.  Mix ups and forgotten letters and broken promises and mistakes don’t just affect me – that I could handle perhaps, but they affect Little H and they affect Cheeky.  The whole family suffers as a result.  And that’s not fair.  As I explained this, as calmly as I could, I felt my legs shaking and a burning lump in my throat at the injustice of it all.  And I realised then, that I am becoming THAT parent.  That shaky, shouty, angry parent.  This is what the NHS has turned me into, in just two years. 

And I haven’t even started with the Education system yet.  God help us all!


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Amazingly, there's someone else out there with as warped a sense of humour as me and has voted this post for the 'funniest post' category in the #SWANs!

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The SWANs Blog Post Awards


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